Long Term UC person - perspective please ?

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Tommy_
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 11/10/2008 8:19 AM (GMT -6)   
Firstly Hello all and thank you for reading my post. Despite being a long term UC person I have only discovered this site while in Hospital...now on my 4th significant flare of life.
I have put my history in the signature box and would dearly like some of you insight or perspective on where I'm at ?!
 
I appreciate we all have a same/similar disease but clearly have different outcomes and suffering.
I'm a fairly positive person with a busy life, a couple of young kids, busy maybe too stressful job. I have had UC my whole adult life, Dx at 20 nd now 37. Typically I have had a very good quality of life between bouts. When hit I end up in a bit of major flare and then end up in hospital. By and large I have had 7 Days of IV steroids, react well - Blood and mucus goes away and bowl returns to fairly normal over a month or so while reducing on Pred.
 
Of course all through the years UC reminds me its there..sometimes urgency or just cramps (general smoldering !). But also perhaps quite fortunately in good shape. I get Endoscoped every year and as recently as June was quite. Then BANG in August 2008 and now in hospital. Sorry for waning on but I would like to ask -
 
1) DO others have this profile ? or is a complete collapse and sugery likely at some point ?
2) Is this type of Steroidal intervention ultimately going to fail sometime ? I know it's to be avoided but....we've UC ! yeah
 
3) I've heard of people not reacting to steroids...is this something that develops through my type of use and intervention or is it something that is binary ie it works / does not work for someone ?
 
Perhaps my tale will also help others who suffer the way I do. My father also has UC. Diagnosed when he was 30 now 67. He has pretty much medicated himself over the years with Predfoam enemas' I suspect its all lower left side. But he seems to do ok. I think I got a heavy does of the gene !!! Thanks Dad.
 
Thanks in advance for your input, this is a great www site and positive inspirational ....particularly when your down right yeah
 
 
 
 
 
 

Age 37
Dx Proctitis - 1989
Dx - UC 1992 - Left Side Moderate
Dx - UC 1996 - Pan Colitis - Severe
Remission until 2005 (couple of mini flares inbetween)
DX - UC 2005 - Pan Colitis - Moderate Severe
DX - UC 2008 - 43 CM Moderate...
 
All of the above required a hospital stay and 5-7 days 4 X 100mg Steroids, Asacol and Prefoam Enema's (20mg).
 
I take predfoam for mini flares and rarely have had to take pred tablets inbetween remission
 
On Asacol 2 x 3 times per day since 2005
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/10/2008 9:18 AM (GMT -6)   
Welcome to the board! I'm sure you will get many responses to your questions.

1. UC is not predictable. There is no way to know whether your patterns will ultimately lead to surgery. Most who opted for surgery did so because medication no longer worked for them. It seems that in your case medication does work for you and gives you periods of remission. Steroidal remission is okay as long as treatment is under 4 months. After that the patient is considered steroid dependent (not a good place to be). Surgery is needed in 20-30% of UC patients meaning that the majority of UC patients will not need surgery.

2. Steroid treatment may or may not fail, again there is no way to know nor have I ever seen documentation on this. Steroids should never be considered a maintenance drug or used for more than 4 months. If you are able to gain remission with a short term of steroids I don't think there is much harm in that BUT I would ask for a base line bone density test and do make sure you are getting your eyes examined every year and let all your doctors know about the ocassional steroid use. The long term side effects from prednisone can be devastating even with short term treatment. Be cautious and be aware.

3. Steroids works for most people, the problem is most people rely on them for long term (more than 4 months). Steroids worked for me but after being on them for 2 years I feared the long term side effects more than I feared surgery. I opted for surgery. Steroids might have kept me functioning for many years (who knows?) but I came to the conclusion that I would never be able to get off of them and I didn't want to take the chance of damage.


Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 11/10/2008 12:19 PM (GMT -6)   
It seems that part of your problem comes from not being on maintenance med(s) 'til 2005. You've had pancolitis for quite a while; did your gastro ever recommend sulfasalazine or Asacol before that? UC is likely to flare at any time, but being on maintenance meds makes flares easier to "catch" early on, in my experience. Predfoam will only help the tail end; you need oral med to keep your right, transverse, & descending colon quiet. At this point you may need an oral immunosuppressant like 6-MP or Imuran to stay in remission, but these are considered safer longterm than steroids. I would recommend reading up on UC to determine whether your gastro has been following the latest recommended practice in treating/advising you. One good Website is Salix Pharmaceuticals Patient Newsletter (Archive), a series of articles written 2004-present by the top IBD-subspecialist doctors practicing in the U.S. Best wishes! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 generic Colazal daily for maintenance of remission)

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/10/2008 12:48 PM (GMT -6)   
I'm different, have always "smoldered" and flared but avoided any hospitalizations (perhaps out of stubborness) except for once for anemia, long ago. Sometimes I wonder if I should have had surgery a long time ago.
But am doing better now than ever without gluten.
Do you up your asacol dose too when you feel a flare coming on? Less awful than pred.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Tommy_
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 11/10/2008 4:39 PM (GMT -6)   
thanks for the replies. I think my pan colitis was probably due to neglect and no ASA's. I've been on ASA's since and they helped, maybe helped me stay left sided this time. I'll stay at it !
Age 37
Dx Proctitis - 1989
Dx - UC 1992 - Left Side Moderate
Dx - UC 1996 - Pan Colitis - Severe
Remission until 2005 (couple of mini flares inbetween)
DX - UC 2005 - Pan Colitis - Moderate Severe
DX - UC 2008 - 43 CM Moderate...
 
All of the above required a hospital stay and 5-7 days 4 X 100mg Steroids, Asacol and Prefoam Enema's (20mg).
 
I take predfoam for mini flares and rarely have had to take pred tablets inbetween remission
 
On Asacol 2 x 3 times per day since 2005
 


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 11/10/2008 7:09 PM (GMT -6)   
Sounds similar to what i have had in the past. Ya no worries sounds like your UC is just as unprodictable as being struck by lightning. You never quite know when a flair is done or not. o.0
Tawn 
19 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
Benifiber
And other over the counter meds.


Hiffhin
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/10/2008 7:33 PM (GMT -6)   
Hey All. Im 22 and have had Severe UC for three years. Although diagnosed with Severe UC I have been taking 2 ASA's 3 Times a day and regularly forget to take them. I dont follow any strict diet and Ive had about 4 flare ups in 3 years. Does this sound strange to anyone else? I hardly Ever feel pain, I have no problems going to the toilet although occasionally I do feel generally unwell. The doctors don't even seemed concerned. Can anyone relate?

Adam

Tommy_
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 11/11/2008 7:25 AM (GMT -6)   
Adam,
 
I suspect this is the challenge, making sure it does get on top of you when your hit but don;t neglect yourself. Problem is this IS a disease and its with you for life. I've had a good quality of life from 20-37 , I play sport worked hard, enjoyed a beer with the guys but be careful of the flare-up's you need to nip them in the bud. I could even be bleeding and have normal motions with no pain but if your colon gets diseased and starts to go down hill arresting this can be hard to stop. My only regret is not sticking to the ASA's before. I will from now on. I'm hoping to hear from others who have suffered like us but have continued to maintain geneal good health through maintenance and regular monitoring. That's the other thing, go for a scope as often as recommended. I'm > 10yrs now so I go once a year, like clockwork. I went in June and was perfect.....now in hospital on Day 7 of IV Cortisteroids with heavinly inflammed left sided UC. Progressing well though and will move to Oral tomorrow, out Friday and then its reduction and making sure I stay well...............HOPEFULLY !!!!!!! eyes
Age 37
Dx Proctitis - 1989
Dx - UC 1992 - Left Side Moderate
Dx - UC 1996 - Pan Colitis - Severe
Remission until 2005 (couple of mini flares inbetween)
DX - UC 2005 - Pan Colitis - Moderate Severe
DX - UC 2008 - 43 CM Moderate...
 
All of the above required a hospital stay and 5-7 days 4 X 100mg Steroids, Asacol and Prefoam Enema's (20mg).
 
I take predfoam for mini flares and rarely have had to take pred tablets inbetween remission
 
On Asacol 2 x 3 times per day since 2005
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/11/2008 8:41 AM (GMT -6)   
I believe with maintenance meds, rebalancing of proper gut ecology with probiotics, support of maintenance meds with natural healing and anti-inflammatories, dietary and lifestyle modifications, you can successfully manage UC and avoid both serious flares and potential surgery. I'm coming up on my ten year mark and haven't had a major flare since the first two years.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/11/2008 12:06 PM (GMT -6)   
Princesa- I think it's fantastic that you have done so well over the years. I had a long 10 year, med free remission once (it did take two years of trying to get off pred up and down then, and finally off)- not even with the special (low carb SCD) diet I now follow without remission. IBD in general is a weird disease- you can do nothing and go into full remission, or do everything right- including natural healing and stress reduction on top of using the official heavy hitters- and still go downhill. I for example have done everything under the sun since the long remission ended- TCM, SCD, low carb SCD, helminths (TSO and hookworm), vit E enemas, DMSO, melatonin, the nicotine patch, all sorts of probiotics, the list goes on and on... and still I can't get a meaningful remission or get off pred for long. But many of them- notably dietary change, probiotics, and TSO, have all helped.... just not enough. It doesn't help of course that some of us are essentially allergic to 5ASA drugs, which are a mainstay for maintenance. Anyway, I am not criticizing you at all, nor complaining, I am just saying that some people can get wondrous results from some "non-medical" approaches, others will get a little bit of benefit, and others get little to none. It's certainly worth trying in all cases. Remi is probably my last hope, though before I resort to the knife, I'll likely try a couple things I haven't yet, such as fecal bacteriotherapy.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/11/2008 3:49 PM (GMT -6)   
Hiffhin said...
Hey All. Im 22 and have had Severe UC for three years. Although diagnosed with Severe UC I have been taking 2 ASA's 3 Times a day and regularly forget to take them. I dont follow any strict diet and Ive had about 4 flare ups in 3 years. Does this sound strange to anyone else? I hardly Ever feel pain, I have no problems going to the toilet although occasionally I do feel generally unwell. The doctors don't even seemed concerned. Can anyone relate?

Adam
That's about how often I flare. My flares are usually related to changes in the seasons, nothing else. I didn't realize how unwell I felt until I started feeling better! My friend who recently had organ transplants said the same thing.
I gave up on trying to remember to have and take meds in the middle of the day. I take 3 asacol 2xday, morning and night, and that works well enough.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/11/2008 4:41 PM (GMT -6)   

Probiotic, I'm sorry to hear you're still struggling. I know you're not asking for advice from me, but after scanning your sig, I thought I'd mention I, too, tried Primal Defense and after a week or so of seemingly feeling better, I began to feel much worse. Symptoms improved after I got off it. My guess was the wheatgrass disagreed with me since I seem to be gluten sensitive. However, I later heard Natasha Trenev talk about soil based organisms as being unsafe - in her opinion as a reknowned probiotic expert - because long-term effects hadn't been studied and because they are "spore formers" and once the spores are in your body, they are difficult, if not impossible to eradicate. Just something to consider as you continue to experiment.

For me personally, I reject the mindset that we have no control over IBD. I also reject that there's nothing we can do but stay on our medications until we get ill enough for surgery. Research (and common sense) tells us there is much we can do to restore healthy ecological gut balance, reduce inflammation and aid the natural healing of the gut. It can be a discouraging, time-consuming process and there is no magic formula/dosage that works for everyone, but I do believe it's in our power to at least greatly reduce our discomfort and improve our health. There were many times in the first couple of years I wanted to give up and I certainly felt plenty sorry for myself, but I'm glad something caused me to keep searching, keep studying, keep trying and not accept my doctor's life sentence of misery.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/11/2008 9:02 PM (GMT -6)   
Hi princesa-- I agree completely with your advice re. natural meds.... and I am always open to advice. I do have lots of different probiotics around all the time, and from time to time try eliminating a couple for awhile. I've done that with Primal from time to time but I may try a couple weeks on other probiotics and see. You never know. Though it's back to allopathic med, the remicade seems to be starting to kick in... definitely having some improvement including formed stools, no blood, and less pain, so I am keeping my fingers crossed. Certainly, if it reduces inflammation, then probiotics will start to be more helpful too- probiotics can be touchy on an inflamed gut and are probably most effective for simply staying in remission.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/12/2008 2:19 PM (GMT -6)   
FWIW, Jini Patel Thompson recommends Natren's powdered Bifido Factor as the safest probiotic to try if you feel you have a lot of inflammation and may be irritated by other probiotic formulas.

Glad to hear the remicade is providing some relief.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 

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